Dad and ESLD

Hi everyone - i'm new here, and found this site while looking up info on my dad's ESLD over the pat months.  I'm really overwhelmed right now.  My dad and i have never had a good or close relationship in all my 36 yrs.  He is dying of end stage liver disease and now wants me to be his main caretaker.  I have been going to help him daily (put him in hospital a week ago because he was disorriented and couldn't move to answer door, or phone, or go to bathroom.  Brought him home 2 days ago and saw a hepatoligist today.  Dad has serious ascites, jaundice, confusion and slight delirum, his kidneys arent quite right, umbilical hernia, and now bleeding from the anus.  He refuses to let me get him in home nursing or put him in a care home.  I can only be there so many hours a day (I live 30 mins. away and have children and am myself disabled).  We are waiting on a call to get him evaluated for liver transplant at UPMC.  I feel like i can't do everything he needs to take care of him (he shouldn't be alone - but does live alone) and manage my own illness and life. 

They won't do paracentisis because his blood is so thin (nomatter how many transfusions) so dr. today increased his lasix to 80mg and aldactone to 200mg and put him on antibiotic for infection of bladder or ascites (not sure).  We cant get hospice because he wants to try for the transplant - even though it seems like a longshot, even to get on the list.  He is severe alchoholic but has not had a drink in 6 months (as far as i can believe).  I just wish we could get a more definitive answer about him.  They say his only shot is a transplant, yet they wont drain his fluid or take aggressive measures to make him more comfortable in the mean time.  There is so much more i could probably write, but this is the gist of it for now, i guess.  If anyone can relate or has an idea of our future days or prognosis, i would so appreciate it.  It's all just so overwhelming and especially considering he has never had any relationship to me till now.  I was informed when i asked him about living will and power of attorney that I am completely out and my aunt (godmother) is the only one in his will and is his power of attorney.  She and I are in total agreement about everything so that isnt an issue.  I guess it just hurts and stings that he expects / wants/ needs ME to do everything for him now and yet I am basically a nothing to him as far as the will.  I don't want his money - it just hurts alot.

 hi guys, i think the transplant age is 65 i,m not sure if other states are differant. my heart goes out to both of u. i went thru this with my dad for six  months, we didnt find out untill july of 2006 that my dad had cirrohsis he was 87 at the time no drinking i,m sure he had it for a while he had some anemia on and off for 4 years and gi dr kept going in and fixing but didnt have a glue that it was cirrohsis gee what a dr. im still very angery about that, had to go 60 miles away to find out. maybe if we would have found it earlier he would have been more comfortable. aquasun, its hard to leave them and almost impossible in his stage. they have to get the bleeding under control before they can do anything else. if you have other health problems yourself then maybe u and your aunt need to gang up and say hey we just cant take care of u 24/7 because thats what he needs right now!! maybe some place close so u can check every other day or everyday. my father was never yellow , he lasted only six months untill he passed what a horriable disease this is, the caretaker gets the brunt of it all. its even harder if the person doesnt respond well or  just plain doesnt listen, it is very overwhelming i was on a dead run for six  months straight there were times i couldnt go on so i thought. at the end stages they stop responding to meds and the kidneys dont work so well then comes the coma like stages and they have a hard time talking and they know that my father was aware of that. he say that i cant even talk anymore. it was very heart breaking. towards the end he sliped iinto a coma because nothing was working so i told the dr to just make him as comfortable as you can, he agreed and he went a day and a half later. i knew in my heart he didnt want to suffer anymore and i couldnt stand to watch it anymore, it was for the best. if your sick also it will be terrible for you. good luck your in my prayers. my father hadnt drank for 25 yrs and never much no hep c b a, the only thing we can come up with is he worked in a chemical factory for thirty years, or some meds he was taking. to patristopher the medical professionals have a lot to learn about when it comes to bed side manners they will make u wait untill u cant wait any more. good luck to the both of u.

annette myfathers child

 patristopher, u have been threw more than one should in a life time, don,t know anything about live liver donors, but have heard its being done, it would all depend if its a match and what shape the donor and the person recieving the liver is in. but i can see your husbands point. hang in and good luck to u all

annette

my father was sick for a long time we just didnt have any good drs to pin point what it was. it started with my fathers legs swelling i would say 8 or 9 years ago drs just boiled it down to age and high blood pressure. then came the aniemia, about 4 or five years ago one of the supposed best gi drs would fix all the bleeding blood vesils, excuse spelling. i was told it was a birth defect, but no problems before that. so u tend to believe one of the best or so you think!!!! weakness in legs. he took liptor for a while dont know if his internist was checking liver counts should have, he had blood work every 3 or 4 months. when i look back he had some signs for a long time i to just thought it was old age, yes he was getting older, he kept up with current news, would send u to store new the correct amount of his money to the penny, then around june he was getting a little confused and he even new it. he fell and hurt his knee so we went to our local hospital and i had him shipped to uh up in cleveland july 4th that week they ran every test u could think of, thats when we found out, down hill from there. tipps does help a lot of people but it still surgery hope shes up to it.
i will say just keep asking questions, some of the drs will beat around the bush put them in a corner and make them explain. always questions make sure u have a good i mean a good gi dr and liver dr. dont feel bad about being bitter thats all part of this disease. i,m still bitter because i dont know how my father ended up with it. just a very hard working man who went to work every day to take care of his family. i cant change the past. my fathers at peace now.
hope things go great for family, my thoughts are with u
annette myfathers child

good luck patti, u are doing everything u can, never second guess yourself about your mother, a lucky lady to have u. dont count her out u will know when the time is near, she just might fool u. its been nice talking to u. have a nice day, and god bless
annette

Hep93 we are in Daytona Beach. I did not realize there was a Shands in Jacksonville. The testing took 5 weeks as they did a few tests in Gainsville and a couple here in Daytona. I am not sure if she is too old for a transplant as she is 72. I found out after the fact about Mayo being so great! I wish we had gone there first. I know Shands is 8th in the country as to number of transplants performed but we may have to give Mayo a call!!! Thanks for the info!!

Thanks hep93! I already emailed them and they already replied with some preliminary info! Thanks so much!!! Patti